Resources

Survivorship Guide for Bone Marrow/Stem Cell Transplant
Coping with Late Effects

Resource Listing

The following list of resources may be helpful to BMT survivors, their caregivers, and families. They are not intended to be endorsements. While the Internet may be a valuable tool, it may also contain misleading or inaccurate information. Remember, the best source of medical advice is your physician. Additional information and resources may be found on the National Bone Marrow Transplant Link website at www.nbmtlink.org.

Bone Marrow/Stem Cell Transplant Information and Support

National Bone Marrow Transplant Link
800-LINK-BMT (800-546-5268) or 248-358-1886
www.nbmtlink.org

National Marrow Donor Program
Office of Patient Advocacy
888-999-6743 or 612-627-8140
www.marrow.org/patient

American Society for Blood and Marrow Transplantation (ASBMT)
847-427-0224
www.asbmt.org

Blood and Marrow Transplant Information Network
888-597-7674 or 847-433-3313
www.bmtinfonet.org

The Bone Marrow Foundation
800-365-1336 or 212-838-3029
www.bonemarrow.org

Center for International Blood & Marrow Transplant Research (CIBMTR)
414-805-0700
www.cibmtr.org

Bone Marrow Donor Information

Be the Match Registry^SM
Operated by the National Marrow Donor Program
800-MARROW2 (800-627-7692)
www.bethematch.org

Asians for Miracle Marrow Matches
888-A3M-HOPE (888-236-4673)
www.asianmarrow.org

Bone Marrow Donors Worldwide
www.bmdw.org

The Caitlin Raymond International Registry
800-726-2824 or 508-334-8969
www.crir.org

DKMS Americas
866-340-3567
www.dkmsamericas.org

Gift of Life Bone Marrow Foundation
800-9MARROW or 561-982-2900
www.giftoflife.org

Alternative, Complementary and Integrative Medicine

Complementary/Integrative Medicine Education Resources
MD Anderson Cancer Center
877-MDA-6789 (877-632-6789)
www.mdanderson.org/departments/CIMER/

Integrative Medicine – Herbs, Botanicals and Other Products
Memorial Sloan-Kettering Cancer Center
212-639-2000
www.mskcc.org/mskcc/html/11570.cfm

National Center for Complementary and Alternative Medicine
888-644-6226
www.nccam.nih.gov

Cancer/Multi-Service

American Cancer Society
800-ACS-2345 (800-227-2345)
www.cancer.org

CancerCare, Inc.
800-813-HOPE (800-813-4673)
www.cancercare.org

National Cancer Institute
Cancer Information Service
800-4-CANCER
www.cancer.gov

Caregiver Support

National Alliance for Caregiving
301-718-8444
www.caregiving.org

National Family Caregivers Association
800-896-3650 or 301-942-6430
www.thefamilycaregiver.org

Rosalynn Carter Institute for Caregiving
Georgia Southwestern State University
229-928-1234
www.rosalynncarter.org

Well Spouse Association
800-838-0879 or 732-577-8899
www.wellspouse.org

Young (Cancer) Spouses
www.youngcancerspouses.org

Children/Adolescents/Young Adults

Beyond the Cure (National Children’s Cancer Society)
800-5-FAMILY (800-532-6459)
www.beyondthecure.org

Cancer Survivors’ Fund
281-437-7142
www.cancersurvivorsfund.org

Candlelighters Childhood Cancer Foundation
800-366-2223 or 301-962-3521
www.candlelighters.org

CureSearch (National Childhood Cancer Foundation and Children’s Oncology Group)
800-458-6223
www.curesearch.org
www.survivorshipguidelines.org

I’m Too Young for This! Cancer Foundation
877-735-4673
www.i2y.com

Planet Cancer
512-452-9010
www.planetcancer.org

Ronald McDonald House Charities
630-623-7048
www.rmhc.org

The Sam Fund for Young Adult Survivors of Cancer
866-439-9365 or 617-938-3484
www.thesamfund.org

SuperSibs!
866-444-7427 or 847-705-7427
www.supersibs.org

Survivor Alert
A Lion in the House
937-767-1924
www.survivoralert.org

The Ulman Cancer Fund for Young Adults
888-393-3863 or 410-964-0202
www.ulmanfund.org

Working Against Cancer
www.workingagainstcancer.org

Clinical Trials

Cancer.gov (National Cancer Institute)
www.cancer.gov/clinicaltrials

CenterWatch Clinical Trials Listing Service
www.centerwatch.com

Coalition of National Cancer Cooperative Groups, Inc.
www.cancertrialshelp.org

EmergingMed
www.emergingmed.com

National Institutes of Health
www.clinicaltrials.gov

Disease-Related Information

American Sickle Cell Anemia Association
216-229-8600
www.ascaa.org

Aplastic Anemia & MDS International Foundation, Inc.
800-747-2820 or 301-279-7205
www.aamds.org

Fanconi Anemia Research Fund, Inc.
888-326-2664 or 541-687-4658
www.fanconi.org

American Brain Tumor Association
800-886-2282 or 847-827-9910
www.abta.org

National Brain Tumor Society
800-934-CURE (800-934-2873)
www.braintumor.org

Immune Deficiency Foundation
800-296-4433
www.primaryimmune.org

National Organization for Rare Disorders (NORD)
800-999-6673 or 203-744-0100
www.raredisorders.org

The Leukemia & Lymphoma Society
800-955-4572 or 914-949-0084
www.lls.org

Children’s Leukemia Foundation of Michigan
800-825-2536 or 248-530-3000
www.leukemiamichigan.org

Leukemia Research Foundation
(Illinois residents and Chicago vicinity)
888-558-5385 or 847-424-0600
www.leukemia-research.org

Lymphoma Research Foundation
800-500-9976 or 310-204-7040
www.lymphoma.org

International Myeloma Foundation
800-452-2873 or 818-487-7455
www.myeloma.org

Multiple Myeloma Research Foundation
203-229-0464
www.multiplemyeloma.org

Fertility, Sexuality, and Intimacy

The American Association of Sex Educators, Counselors, and Therapists
804-752-0026
www.aasect.org

American Society for Reproductive Medicine
205-978-5000
www.asrm.org

Female Sexual Medicine Program
650-723-7243
www.womenshealth.stanford.edu/fsm/

Fertile Hope
(Now part of LIVESTRONG)
866-965-7205
www.fertilehope.org

Genetics and IVF Institute
800-552-4363 or 703-698-7355
www.givf.com

Resolve: The National Infertility Association
703-556-7172
www.resolve.org

Financial and Fundraising

Cancer Financial Assistance Coalition
www.cancerfac.org

The Max Foundation
888-462-9368 or 425-778-8660
www.themaxfoundation.org

National Association of Hospital Hospitality Houses
800-542-9730 or 828-253-1188
www.nahhh.org

National Foundation for Transplants
800-489-3863 or 901-684-1697
www.transplants.org

NTAF (formerly National Transplant Assistance Fund)
800-642-8399 or 610-535-6105
www.ntafund.org

Patient Access Network Foundation
866-316-7263
www.patientaccessnetwork.org

Patient Advocate Foundation
800-532-5274
www.patientadvocate.org

Insurance and Prescriptions

Foundation for Health Coverage Education
800-234-1317
www.coverageforall.org

Medicare
800-MEDICARE (800-633-4227)
www.medicare.gov

Medicare Rights Center
800-333-4114
www.medicarerights.org

NeedyMeds, Inc.
www.needymeds.org

Partnership for Prescription Assistance
888-477-2669
www.pparx.org

Legal Rights and Workplace Issues

American Bar Association
800-285-2221
www.abanet.org

Americans with Disabilities Act
800-514-0301
www.ada.gov

Cancer and Careers
212-685-5955 ext. 132
www.cancerandcareers.org

Cancer Legal Resource Center
866-843-2572 or 213-736-1455
www.cancerlegalresourcecenter.org

Equal Employment Opportunity Commission
800-669-4000
www.eeoc.gov

Patient Advocate Foundation
800-532-5274
www.patientadvocate.org

Managing Side Effects

American Pain Society
847-375-4715
www.ampainsoc.org

Boston Foundation for Sight
781-726-7337
www.bostonsight.org

The Cancer Journey
(Oncology Nursing Society)
866-257-4667
www.thecancerjourney.org

National Bone Marrow Transplant Link
Coping with Chronic GVHD
Telephone Education/Support Group and Webcasts
800-LINK-BMT (800-546-5268) or 248-358-1886
www.nbmtlink.org

National Lymphedema Network
800-541-3259 or 510-208-3200
www.lymphnet.org

National Sleep Foundation
202-347-3471
www.sleepfoundation.org

The Neuropathy Association, Inc.
212-692-0662
www.neuropathy.org

Nutrition

American Institute for Cancer Research
800-843-8114 or 202-328-7744
www.aicr.org

Food and Nutrition Information Center
www.nutrition.gov

Survivorship

Association of Cancer Online Resources (ACOR)
212-226-5525
www.acor.org
BMT Talk: listserv.acor.org/archives/bmt-talk.html
GvHD: listserv.acor.org/archives/gvhd.html

R.A. Bloch Cancer Foundation, Inc.
800-433-0464 or 816-854-5050
www.blochcancer.org

Cancer.Net (American Society of Clinical Oncology)
888-651-3038 or 571-483-1780
www.cancer.net

Cancer Hope Network
877-467-3638 or 908-879-4039
www.cancerhopenetwork.org

Cancer Support Community
(Formerly Gilda’s Club and the Wellness Community)
888-793-9355
www.cancersupportcommunity.org

LIVESTRONG Lance Armstrong Foundation
866-673-7205
www.livestrong.org

National Cancer Survivors Day Foundation
615-794-3006
www.ncsd.org

National Coalition for Cancer Survivorship
888-650-9127 or 301-650-9127
www.canceradvocacy.org

Oncolink
www.oncolink.com

Planet Cancer
512-452-9010
www.planetcancer.org

Vital Options International
818-508-5657
www.vitaloptions.org

Transportation

Air Care Alliance
888-260-9707
www.aircareall.org

Air Charity Network
877-621-7177
www.aircharitynetwork.org

Corporate Angel Network, Inc.
866-328-1313 or 914-328-1313
www.corpangelnetwork.org

National Patient Travel Center
800-296-1217
www.patienttravel.org

CDs/DVDs/Videos

Coping with Chronic GVHD in Adults and Meeting the Challenges of Chronic GVHD in Children & Adolescents, National Bone Marrow Transplant Link, 2009

Decisions. Support. Possibilities. Transplant as an Option When You are 50 and Older, National Marrow Donor Program, 2007

Discovery to Recovery: A Child’s Guide to Bone Marrow Transplant for Children Ages 5-9, National Marrow Donor Program, 2005

Forward! Living Life After Transplant (teens, young adults), National Marrow Donor Program, 2007

Guided Visualization: Working with the Healing Power of Your Immune System, Aquarius Health Care Media, 2003

The Healing Attitude: The Empowered Patient, Aquarius
Health Care Media, 2007

The New Normal: Life After Bone Marrow/Stem Cell Transplant, National Bone Marrow Transplant Link, 2001

Stress Relief Healing with Dr. Russ Greenfield, Aquarius Health Care Media, 2006

Words of Experience. Stories of Hope. A Guide to Marrow and Cord Blood Transplant for Patients and Caregivers, National Marrow Donor Program, 2008

Books and Magazines

100 Questions & Answers about Life after Cancer: A Survivor’s Guide, by Page Tolbert, 2008

100 Questions & Answers about Cancer and Fertility, by Kutluk H. Oktay, 2008

After the Diagnosis: How to Look Out for Yourself or a Loved One, by Donna L. Pikula, DDS, 2006

American Cancer Society Complete Guide to Complementary and Alternative Cancer Therapies, 2nd edition, 2009

The Anatomy of Hope: How People Prevail in the Face of Illness, by Jerome Groopman, 2005

Anatomy of an Illness as Perceived by the Patient: Reflections on Healing and Regeneration, by Norman Cousins, 2005

Breaking the Silence: Inspirational Stories of Black Cancer Survivors, by Karin L. Stanford, PhD, 2005

Cancer Caregiving A to Z: An At-Home Guide for Patients and
Families, American Cancer Society, 2008

Cancer Dictionary, by Michael J. Sarg, 2007

Cancer Etiquette: What to Say, What to Do, When Someone You Know or Love Has Cancer, by Rosanne Kalick, 2005

Cancer Fitness: Exercise Programs for Patients and Survivors, by Lance Armstrong and Anna L. Schwartz, 2004

Cancer in Context: A Practical Guide to Supportive Care, by James Brennan, 2004

Cancer Survivor’s Almanac: Charting your Journey, National Coalition for Cancer Survivorship, edited by Barbara Hoffman, 2004

The Cancer Survivor’s Guide: The Essential Handbook to Life after Cancer, by Michael Feurerstein, PhD and Patricia Findley, 2006

Caregivers’ Guide for Bone Marrow/Stem Cell Transplant: Practical Perspectives, National Bone Marrow Transplant Link, 2007

Childhood Cancer Survivors: A Practical Guide to Your Future, by Nancy Keene, 2007

Crazy Sexy Cancer Tips, by Kris Carr, 2007

Creative Visualization: Use the Power of Your Imagination to
Create What You Want in Life, by Shakti Gawain, 2009

Chronic Graft Versus Host Disease: Interdisciplinary Management, by Georgia B. Vogelsang, MD and Steven Z. Pavletic, MD, 2009

Coping with Cancer Magazine, www.copingmag.com

Coping with Prednisone (and Other Cortisone-Related Medicines), by Eugenia Zukeman and Julie R. Inglefinger, MD, revised and updated 2007

CURE Magazine,www.curetoday.com

Diagnosis: Cancer, by Wendy Schlessel Harpham, 2003

Eating Well Through Cancer, by Holly Clegg & Gerald Miletello, MD, 2008

Eating Well, Staying Well During and After Cancer, edited by Abby Bloch, PhD et al. American Cancer Society, 2004

Everyone’s Guide to Cancer Supportive Care: A Comprehensive Handbook for Patients and their Families, by Ernest Rosenbaum, MD and Isadora Rosenbaum, 2005

Everyone’s Guide to Cancer Survivorship: A Road Map for Better Health, by Holly Gautier, RN and Ernest H. Rosenbaum, MD, 2007

Everything Changes: The Insider’s Guide to Cancer in Your 20’s and 30’s, by Kairol Rosenthal, 2009

Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness, by Jon Kabat-Zinn, PhD, 2009

Handbook of Cancer Survivorship, by Michael Feurerstein, PhD, 2007

The Healing Power of Humor: Techniques for Getting Through Loss, Setbacks, Upsets, Disappointments, Difficulties, Trials, Tribulations, and All That Not-so-funny Stuff, by Allen Klein, 2003

Kitchen Table Wisdom: Stories That Heal, by Rachel Naomi Remen, MD, 2006

The Lonely Patient: How We Experience Illness, by Michael
Stein MD, 2007

Mapping the Maze: A Personal Financial Guide to Blood Stem Cell Transplants, by National Marrow Donor Program, 2003

Nutritional Issues in Cancer, edited by Valerie J. Kogut, MA, RD, LDN, 2005

One Bite at a Time Nourishing Recipes for Cancer Survivors and Their Friends, by Rebecca Katz with Mat Edelson, 2nd edition, 2008

Picking Up the Pieces: Moving Forward after Surviving Cancer, by Sherri Magee and Kathy Scalzo, 2007

Resource Guide for Bone Marrow/Stem Cell Transplant:
Including Bone Marrow, Peripheral Blood, and Cord Blood, National Bone Marrow Transplant Link, 2006

Sexuality and Cancer: For the Woman Who Has Cancer and Her Partner, American Cancer Society, 2005

Survivorship Guide for Bone Marrow/Stem Cell Transplant: Coping with Late Effects, by Keren Stronach, National Bone Marrow Transplant Link, 2010

Understanding Cancer Therapies, by Helen S.L. Chan, 2007

What Helped Get Me Through: Cancer Survivors Share Wisdom and Hope, edited by Julie K. Silver, MD, American Cancer Society, 2009

When Bad Things Happen to Good People, by Harold S. Kushner, 2004

You Can Conquer Cancer: Prevention and Management, by
Ian Grawler, 2005

YOU: The Smart Patient: An Insider’s Handbook for Getting the Best Treatment, by Michael F. Roizen, MD, and Mehmet C. Oz, MD, with the Joint Commission, 2006

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